Conference Adjournment

Debate between Siobhain McDonagh and Baroness Winterton of Doncaster

Tuesday 19th September 2023 Commons Chamber

[Siobhain McDonagh (Mitcham and Morden) (Lab)]

It is now 12 weeks since my sister Margaret died of a glioblastoma brain tumour. May I thank you, Madam Deputy Speaker, for attending her funeral? Since her death, I have made it my mission to make sure that glioblastoma has a cure. I would not wish Margaret’s experience on my worst enemy.

Through caring for Margaret for 19 months, I have learned a few things. Through Margaret’s treatment and campaigning on this issue, I have met industry experts, trade bodies, Ministers, charities and scientists. It is a topic that I know far more about than I would ever have wished to. And the biggest insight I have gained is this: the treatment of brain tumours in the NHS has not improved in 30 years. When a person is diagnosed with a glioblastoma, they get eight weeks’ radiotherapy, followed by as much chemotherapy with temozolomide as they can manage. That drug was introduced in 2005, and it is called the gold-standard treatment in our NHS. I can tell you that it is not gold standard; it is not even plastic standard. It does not cure anyone; it extends the life of very few people. Margaret could take only four to six weeks of it before her kidneys collapsed.

What else are you offered? A lifetime of paying your taxes, working hard, doing your best, and there are no drug trials; there are no alternatives; there is no hope. Perhaps the unspoken advice is just to go home, lay down and wait to die. The only hope that does exist is in other countries. Families crowdfund and spend their life savings travelling all over the world. In my case, I took a very ill Margaret on a plane to Germany every month.

Over the last decades, we have seen a transformation in hope and life expectancy in relation to some cancers, but absolutely zero progress for brain tumours. Members do not need to take my word for it; they just need to check the facts at a glance. The average life expectancy for the 3,200 people who will be diagnosed with a glioblastoma in the next year is nine months. The five-year survival rate is only 12.9%. The sad facts speak for themselves: nothing has changed; nothing has improved; and if we keep carrying on down the same path, nothing will ever improve.

On Friday, I received an unsolicited text from Cancer Research UK, which told me that together we are beating cancer and powering progress, and I was to see how far we have come. You can imagine the irony with which I read that text.

But it is not the same for all cancers. We know that great things have been done. For lung cancer, in 2010 the five-year survival rate was 10.3%, not dissimilar to the survival rate for glioblastoma; the difference, however, is that by 2020 the five-year survival rate for lung cancer had doubled to 21%. In 2020, the five-year survival rate for breast cancer was 85.9%. There has been a concerted effort by clinicians, charities, the Government and families to make sure that people with breast, lung and bowel cancer live longer, as they should. The sad truth is that brain cancer has been forgotten about, and because only 3,200 people are diagnosed each year it is not profitable for the pharmaceutical industry to invest in it and find a cure.

I promise that this speech will get a bit brighter. I said earlier that the biggest insight I have gained through this process is that the treatment of brain tumours on the NHS has not improved in 30 years. The next thing I learned is equally important: it does not have to be this way; there are solutions, we just need to try something new. And here is my something new: my four-point plan to transform the outcomes of people diagnosed with a glioblastoma.

First, we need a target of getting 200 glioblastoma patients into clinical trials each year on a drug that has the potential to change the course of the disease. That would be 1,000 patients over the lifetime of a Parliament. With those trials, we can begin to understand what works and what does not.

Secondly, the NHS should repurpose every drug already licensed to deal with other tumours for clinical trials on brain tumours. That has not happened yet, because glioblastoma is a very small target market for the pharmaceutical industry. The Government must either encourage or ultimately force the pharmaceutical companies to provide the drugs for these trials. Repurposing those drugs would be a cheap way to make a huge difference. It is the only way that we can make a difference.

Thirdly, the NHS should ensure that every neuro-oncology multidisciplinary team has a medical oncologist who is a core member and is required to attend meetings to discuss patients, so that brain tumour patients are not left in a corner of the ward because there is no specialist arguing for them. Unless a neuro-oncologist is in the room, we will not benefit from their ideas or expertise.

Fourthly, the NHS should require that every doctor training to be a medical oncologist should go through a mandatory course on brain tumours. At the moment, the Royal College of Physicians requires no compulsory training. Doctors have to take two courses on bowel cancer as part of their training, but nothing on brain tumours—believe me, they do not take the brain tumour option. The reason why there is nobody on those wards and the research infrastructure is not there is that nobody is being trained or is excited to do the job.

If we can do those four things, we can have some hope. I have spoken to Dr Paul Mulholland, the fantastic oncologist at University College Hospital, and he feels that he could find a cure within seven years. But it is not going to happen on its own, and it is certainly not going to happen if we carry on trying the same things we have been trying for the last 30 years. Einstein famously said:

“The definition of insanity is doing the same thing over and over again and expecting different results.”

I think we are getting to that point with the treatment of glioblastoma. It is time to break the mould, take a risk and try something different. Margaret’s life requires nothing less.

[Madam Deputy Speaker (Dame Rosie Winterton)]

I am sure I speak on behalf of the whole House in passing our condolences on to you, Siobhain, and your family. Your dedication in caring for Margaret was unsurpassed—we all know that—and your bravery and energy in the campaigning you have done since, at a time of such grief, is truly inspiring. We are all thinking of you, and thank you for making such a brave speech. [Hon. Members: “Hear, hear.”]